Authors:Johannes Starkbaum (University of Vienna)
Melanie Goisauf (University of Vienna)
Anna Durnova (University of Vienna)
Paper short abstract:
Based on empirical data gathered from several discussion events in Austria, this paper elaborates on how citizens enact their “connection” to bio-objects in the context of biobanking and how their understandings are related to actual debates on consenting practices.
Paper long abstract:
Providing different kinds of body material for research purposes has been subject of debates for many decades. Bio-objects - such as urine, blood or tissue - contain information about the subjects or groups of origin. This instance has inspired a bulk of literature that discusses the ontological status of these materials as well as the "nature" and impacts of the connection between bio-objects and their originators.
Building on these studies, our paper seeks to explore this question in the context of the Austrian biobanking landscape. It draws on empirical data from nine discussion events (Citizen-Expert-Panels) where Austrian citizens, patient representatives and professional experts from the field of biobanks debated biobanking in Austria and Europe. These data allow insights into how citizens build a connection to their body material, in discursively dividing the sample into its physical materiality and, foremost, understanding it as a personalized data storage medium. Hence, it was anticipated that donors should have the possibility to "track" their samples in order to have proof that their sample and data had been used for the purpose they consented for, and, at least for some of the participants, to know what results and research advances were made from the biobanks or studies in which they were participating. These empirical findings are becoming even more relevant in the context of the (expert) debates on re-consent for the novel data protection directive of the European Union.
Revisiting bio-objects and bio-objectification: Categories, materialities and processes central to the (re)configuration of "life".